/Dad who pushed for medical marijuana seethes at delays that make disabled daughters life harder

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Dad who pushed for medical marijuana seethes at delays that make disabled daughters life harder

Posted by Eric Stevens61sc on February 20, 2018

Dad who pushed for medical marijuana seethes at delays that make disabled daughters life harder

Miami Herald

Elizabeth Koh

TALLAHASSEE

When Seth Hyman first began to buy medical marijuana in Florida for his 12-year-old daughter last year, he hoped it would be the answer to fixing her life-threatening seizures.

A genetic disorder means Rebecca, who cannot walk or speak, had about a hundred seizures daily, from a few seconds to a few minutes long. But the Weston father, who began lobbying the legislature in 2014 when it passed an initial bill legalizing a limited form of medical marijuana, said the family faced hurdles even after Rebecca was approved to obtain the drug.

A limited number of growers has meant fewer varieties they can test to try managing Rebecca’s condition, and she still has around 50 seizures a day, Hyman said. Even the varieties that are available are in low supply — Hyman said the dispensary the family goes to recently issued a limit of two bottles, which would last about 40 days on the thrice-daily doses that are injected into his daughter’s feeding tube.

“With the current system, you’re very limited to the strains of product that are available,” said Hyman, who has been hired by a law firm specializing in medical marijuana cases. “Some patients can’t even get their medicine.”

Months after the legislature passed a law enacting a constitutional amendment that broadly legalized medical marijuana, patients say they are hampered by delayed regulations yet to be implemented by state health officials. The Department of Health’s Office of Medical Marijuana Use, which is tasked with devising and implementing rules to implement the law, has blamed administrative challenges and lawsuits for the delays.

In recent weeks, lawmakers have become especially dissatisfied with those explanations. After a series of deadlines were missed and letters objecting to some rules went unanswered for months, lead legislators have called the office’s behavior disrespectful and are discussing yanking funds from the department as they assemble the state’s budget in the next four weeks.

But particularly frustrated are the patients’ parents, who lobbied the legislature for years to legalize medical marijuana in the first place.

“I’m certainly happy to see the legislature really, truly apply some pressure,” said political consultant Ben Pollara, who led the group behind the 2016 constitutional amendment. “Patients would like it, too. What they would like more is for [the department] to apply the law.”

When applications for identification cards to obtain medical marijuana were first opened, delays stretched for months at a time, Hyman said. “I know patients who had to wait 90 days-plus to get their card, or patients who waited 60 days and finally got an answer saying, ‘Oh, your picture’s wrong,’” he remembered.

Some regulations, such as those on new licenses for medical marijuana treatment centers, edibles or lab testing, also have yet to be implemented. Lawmakers have been asking for answers from the Department of Health regarding those delays, and since October, a joint legislative committee has sent more than a dozen letters objecting to rules on issues ranging from medical marijuana licenses to caregivers’ ID cards.

But the office did not respond to the letters until last Friday, when the Department of Health’s general counsel wrote that the committee’s objections might cause more delays with the next application cycle and some regulations.

Legislators were particularly incensed by that letter at the Joint Administrative Procedures Committee meeting Monday. Christian Bax, the agency’s head, sat mute while its members voted unanimously to object to some of its emergency rules.

Sen. Kevin Rader, D-Delray Beach, a committee chair, called the lack of responsiveness insulting and told reporters that the legislature should consider targeting the office’s funding.

Legislators have already begun making moves to flex their spending muscle. Last week, Rep. Jason Brodeur, R-Sanford, pushed an amendment in the House budget to freeze $2.1 million in salary and funds at the Department of Health. Sen. Rob Bradley, R-Fleming, the powerful chairman of the Senate Appropriations Committee, said he agreed with the measure and added Wednesday that legislators were considering using “the power of the purse” to respond to the Department of Health’s inaction.

Department spokeswoman Mara Gambineri said the agency is working toward implementing all required regulations and that it plans to respond to legislators’ concerns in the 30-day window they are allowed.

“There is access to medical marijuana right now,” she said. “Patients are receiving medication, and every day we continue to process new applications… . Those parts and pieces are moving simultaneous to the rule-making progress we’re making.”

But the department is responsible for implementing those rules in a timely fashion, Pollara said. In the meantime, “the patients are the ones who are taking this on the chin.”

Some parents have already taken matters into their own hands. Moriah Barnhart, who helped push for medical marijuana after her daughter, Dahlia, was diagnosed with a brain tumor, said even though the application process has been open for months, she is still getting her daughter’s medical marijuana from out of state and has not applied for a card.

“I’ve never gotten a legal product from the state of Florida,” said Barnhart, citing the long wait time and cost of a card. “We really don’t have the means to obtain the meds Dahlia needs regularly.”

Barnhart said the legal route, though it now exists, is still out of reach for some who are too poor to afford the $75 identification card. She said the costs of strains grown in Florida are also higher by hundreds of dollars compared to those in other states, because of fewer growers and lower supply.

If rules had been established more quickly, “we would have everything — everything that was supposedly implemented to date would be implemented,” she said.

Florida, despite its successful legalization of medical marijuana, still does not provide sufficient access, she added.

“As much as I wanted this to work out, we just need to admit we are not where we are supposed to be.”